MeSH: Adolescent
Relationship of race and ethnicity on access, timing, and disparities in pediatric palliative care for children with cancer
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PURPOSE: Pediatric palliative care (PPC) improves quality of life for children and adolescents with cancer. Little is known about disparities between different racial and ethnic groups in the frequency and timing of PPC referrals. We evaluated the impact of race and ethnicity on the frequency and timing of PPC referral after initiation of an embedded…
Shared spiritual beliefs between adolescents with cancer and their families
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BACKGROUND: FAmily CEntered (FACE) Advance Care Planning helps family decision makers to understand and honor patients’ preferences for future health care, if patients cannot communicate. Spiritual well-being is a key domain of pediatric oncology care and an integral dimension of pediatric advance care planning. PROCEDURE: As part of four-site randomized controlled trial of FACE for…
Sociodemographic and hospital-based predictors of intense end-of-life care among children, adolescents, and young adults with hematologic malignancies
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Background: Children, adolescents, and young adults with hematologic malignancies tend to receive high-intensity end-of-life care (HI-EOLC), but sociodemographic and hospital-based predictors of HI-EOLC remain unclear. Method(s): The authors conducted a population-based, retrospective cohort study with the Premier Healthcare Database. They identified individuals with hematologic malignancies who were 0 to 39 years old at death and…
Patient, Family, and Clinician Perspectives on End-of-Life Care Quality Domains and Candidate Indicators for Adolescents and Young Adults with Cancer
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Importance: End-of-life care quality indicators specific to adolescents and young adults (AYAs) aged 12 to 39 years with cancer have not been developed. Objective(s): To identify priority domains for end-of-life care from the perspectives of AYAs, family caregivers, and clinicians, and to propose candidate quality indicators reflecting priorities. Design, Setting, and Participant(s): This qualitative study…
Patterns of medication use at end of life by pediatric inpatients with cancer
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OBJECTIVE: To describe medication utilization patterns by pediatric inpatients with cancer during their last week of life. METHODS: This retrospective study used data from the Vizient Clinical Database/Resource Manager, a national compilation of clinical and resource use data from over 100 academic medical centers and affiliates. Patients (0-21 years) with malignancy who died during hospitalization (2010-2017)…
Randomized Clinical Trial of a Legacy Intervention for Quality of Life in Children with Advanced Cancer
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Background: Legacy-making (actions/behaviors aimed at being remembered) may be a significant component for quality of life (QOL) during advanced illness and end of life. Although legacy interventions have been tested in adults, the impact of legacy activities on QOL for children has yet to be clearly defined. Objective: This study examined the impact of our…